What’s the one thing I’ve said more than anything else over the last five years? “No one understands.”
I sigh it quietly. I mutter it under my breath. I exclaim it loudly in frustration. I struggle to say it through tears.
But I don’t think I’ve ever blogged it.
Who doesn’t understand? The professional people I associate with who act like it’s a big shock if I mention any pain or symptom of living with RA. Most of them have no earthly idea, as my mom would say.
“No one” is a big group, isn’t it? Not even medical or health organizations that I communicate with frequently. Not my neighbors. Not the media. Not the cashier. Not the church.
Not in a house. Not with a mouse. Not in a train. Not in the rain. Not on a boat. Not with a goat.
Of course they don’t understand. It’s impossible to understand what it’s like to have weak, stiff, and painful joints all over your body, right?
Abbott Denmark’s “arthritis suit” aids understanding of RA
A reader sent this video of an empathy suit for people with RA / JRA. With the suit on, healthy people experience some of the symptoms we live with such as stiffness, limited range of motion, lack of dexterity, and difficulty with balance.
There is one missing piece: pain. If pain were included, it might be a sympathy suit instead of an empathy suit. But it would be inhumane to make someone suffer this pain intentionally.
Abbott Denmark brought the “arthritis suit” to 14 year-old Amalie’s school so that her classmates could experience the challenges she faces with Juvenile Arthritis. Challenges she experiences whether she’s in a house or with a mouse or on a boat or with a goat…
Why have only 1,000 people seen this video? Let’s change that. Are there more of these suits? Will Abbott give one to the Rheumatoid Patient Foundation (RPF)? If you work for Abbott and you’re reading this, please contact me.
Recommended reading
- The Goal with RA Is Not Perfection: Don’t Give Up the Things You Love!
- Having a Cuppa Together: a Rheumatoid Arthritis Meme
- Problems with Preventive Care and Rheumatoid Arthritis Mortality
